Exercising & ME/CFS – The “E” Word: Part 1

 I read an article the other night from the Facebook CFIDS Association page that struck my attention because it had to do with the controversy of exercising with ME/CFS.  All of us know that having this illness makes exercising extremely difficult and for a lot of ME/CFS patients, exercise is impossible.  I have struggled myself with this issue over the years because I truly believe that exercise is beneficial to the body and mind but I have had times and have had even years where I haven’t been able to exercise at all.  I’m now at a place with my health where I have been able to do a LIGHT work out and LIGHT resistance training about twice a week.  If I do anymore than that, I end up in a flare.   There are weeks when I can only make it to the gym one day and there are weeks when I can’t go at all.  I’ve also had to put my gym membership on hold for an extended period of time when I have been really bad.  I have also discovered that I have to keep my heart rate in the “warm up” range and can’t get it up to the “fat burn” or “cardio” range or that will also put me into a flare. 

I have had issues at the gym where I attend with one of the workers there who is always trying to push me to get my heart rate up, work out longer and more.  I have told her about my illnesses and apparently she still doesn’t get it because she continues to try and push me.  But I know what I can do and that is all I am going to do.  The fact that I’m going to the gym at all is amazing within itself considering everything I’m dealing with and so I just keep doing my workouts, slow and steady, and just ignore her.  :)

Doctors don’t get how exercise affects ME/CFS patients either so their answer to our extreme fatigue is to exercise.  “You would just feel better if you would do something”.  I admit that there are times when I do feel better when I do get out and walk or work out, but there are times when I feel worse.  But it’s not a black and white issue and because I may feel better in the short term, I can flare tomorrow from the work out.  It’s always an iffy situation. 

Jennifer Spotila, J.D., a member of the CFIDS’s Association Board of Directors, wrote a great article on exercising with ME/CFS called The “E” Word.  Jennifer says:

Exercise is a four-letter word to many people with chronic fatigue syndrome (CFS). Every patient has been told by a doctor, family member and/or friend that exercise would help him/her feel better. Every patient has tried to be physically active in some way and experienced the same end result: relapse and post-exertional malaise (PEM) that makes them feel much worse, not better. There is a chasm between what many doctors recommend and what patients experience. Why? Is there any way for patients to engage in physical activity without PEM?

Graded exercise therapy (GET) has been recommended as a treatment for CFS for many years. In conventional GET, the patient is instructed to increase activity according to a schedule, regardless of symptom status. Numerous GET studies have claimed improvement in fatigue and other symptoms in the studied CFS patients.

However, a careful examination of those studies raises questions about cohort selection, drop-out rates, and study design.  There is evidence, both in patient surveys and in research literature, that many CFS patients experience symptom exacerbation and serious setbacks after GET.  Research has also suggested that there may be activity ceilings for CFS patients, such that activity cannot be increased past a certain limit.  Despite the conflicting research, some doctors may take the GET studies at face value and recommend exercise to CFS patients on that basis.

Doctors may insist that exercise is necessary because it is a successful treatment or adjutant therapy for people with a wide variety of conditions and illnesses. Dr. Todd Davenport notes, “The usual prescription for fatigue is exercise. Patients reporting fatigue come to a physical therapist, they are supported in exercising, and they feel better. But CFS breaks many of the rules health care providers are taught about how the body works in response to exercise.” CFS patients are trapped in an alternate universe where exercise is not just difficult, but actually makes them sicker. There is abundant evidence of physical abnormalities in CFS patients after exercise, giving rise to symptom exacerbation beyond normal aches and pains.  Health care providers must understand the unique effects of exercise on people with CFS. Just as CFS patients may be overly sensitive to medications, even in reduced doses, they are sensitive to exercise, which causes a delayed relapse even if the exercise seems well tolerated at the time. Therefore, “Like pharmaceutical therapies, prescribing exercise as therapy . . . must be predicated on understanding the risks and benefits of exercise as thoroughly as possible. Only in this manner can the ‘right’ dose be achieved.

So the $100,000 question that everyone wants to know is:  Can ME/CFS patients be physically active at some level without triggering a relapse of their chronic fatigue syndrome? 

Some researchers believe that yes, it is possible.  As a patient myself, I too believe that this is possible depending on how severe the patient’s ME/CFS is.  I am not an expert on the subject and I’ve said on here 1,000 times that I am not a doctor, but I believe that we know our bodies better than anyone – even the doctors.  After being sick for so long, I have really learned how to tune into my body, what I can and can’t do (for the most part) and I think I have finally found the RIGHT BALANCE OF EXERCISE THAT WORKS FOR ME AND MY SITUATION.  Please note I don’t recommend that anyone else do anything to make their own illness worse.  You have to do what you feel is best for your body and you need to discuss all of your options with your physician.  My doctor completely supports my workout as long as I keep it to a minimum.

Jennifer says:

“It is possible to adapt exercise advice compassionately and intelligently to the individual situation.”  Several methods of determining safe levels of exercise have been proposed, including methods from Drs. Clapp, Davenport, Nijs, and Wallman.  The conceptual model proposed by Davenport and his colleagues from the Fatigue Lab at the University of the Pacific uses an objective measure the patient’s heart rate to help patients be physically active without causing PEM. 

Part 2 will discuss these methods further so stay tuned for more!

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